For those of you that know me personally you know that I am a strong willed person, I am dedicated, devoted and passionate about many things. When I was in high school I had a teacher once tell me that I had come a long way since I came from a ‘single parent household.’ Something about that comment dug into my soul and lit a fire, a fire that I used to excel through my profession, with a determination to prove people wrong. I was determined to prove to the world that being from a ‘single parent household’ was not a negative… My goal was to get my doctorates before I was 30, something that I felt further proved this, to live a quite ‘perfect’ life… For the past 12 years of my career I have excelled, I feel that I am quite good at teaching students, and love my profession.
For those of you that know me on a personal level I am quite spontaneous, impulsive and super hyper…or at least I used to be. In 2004, while pregnant with my first son I became extremely ill. My body stopped digesting food and I thought for sure I was going to die. Doctors ran as many test as they could, but could not do anything invasive until after my son was born. After my son was born, I had only gained 6 pounds while being pregnant. I guess it is fortunate that I had some ‘extra’ before then, because I dropped weight so quickly after he was born. My husband tells me know that I looked a lot like Mr. Burns at the time, and the doctors were still unsure of what to do. And I felt like my body was not my own. This did not help my already deteriorated self image at the time, having just had a baby, then losing weight so fast left me with a lot of loose skin…not to mention the fact that I had no control over my colon which made things even worse!
After a blood transfusion and high doses of medication I felt somewhat normal. I was able to go to work, but would spend the evenings feeding my baby boy in the bathrooms. I was not living, I was simply going through the motions as best as I could. My husband was practically a single father at this time, because when I wasn’t at work, I was in the bathroom or sleeping. Some medicines helped, just to be plagued with side effects… I lost myself during this time. I was too afraid to be impulsive, or spontaneous. I only wanted to stay home, this was not me. Things improved a little and my husband and I decided to venture to a new home, and moved to Maui. We needed a change of pace, our lives were quite stressful, I was not the woman that he fell in love with. In sickness and in health was literally taking on a new meaning. This man loves me, but it was hard to see me physically and emotionally dying.
There is something about living on an island that is calming, that takes you away from feeling the pressure and stress of life on the mainland. I guess all that lack of stress, and highly medicated self was a bit too relaxed, and we became pregnant with our second son. This time was a little different, I was on a lot of medicines and was able to manage symptoms while pregnant, which was a little better. After I had my son though I was sent back into a whirlwind of a flare. Again loosing my body to this disease. My husband was working quite a bit back then and I was trying to teach, with two small children and maintaining a flare from this disease. I would literally have to stop 3 times before I even got to work to use the restroom, and that was on the days that I could make it to the different bathrooms. I convinced my husband that we needed to move back to be closer to family, to have a support group, as much as I loved my island home I felt that I needed to figure out this disease and try to get some help.
My grand expectations of how green the grass was back on the other side was hit with reality when it felt like the walls were caving in. When we moved back ‘home’ the reality was that everyone else has their own lives, and the ‘imaginary’ family that I talk to on the phone, and get emails from were too busy with their own lives to really be a part of ours. My children would have plans scheduled with grandparents only to be taken to the mall to go shopping, phone calls and visits became less frequent once our arrival wore off. We were stuck in a hole, living in the house I grew up in because my husband was unable to find work, and I was sick and driving over an hour a day to work. I was thrown back into the ‘Professional’ life of teaching, rush hours, and commutes. My body couldn’t take it, and I was sicker then ever. Luckily with mass amounts of Prednisone on board I didn’t lose any weight, but I would have to pull over to ‘squat’ in the woods quite frequently!
We ended up moving into a small apartment, my husband staying home with the kids during the day and then working at nights. I was tired, sick, and just wanted to feel like myself again. The flares wouldn’t stop, I would spend weeks in the hospital which only put us further into the hole. Finally we filed bankruptcy and made our plans to move back to our island. We had to get away from all the drama and craziness of our professional lives, or lack thereof. The final straw was my last hospital stay. I could not leave the bathroom all night, into the early morning. I was vomiting blood, and finally my husband said ‘this is enough.’ He dragged me to the ER, where I was rushed back for fluids, and tests. I had pancreatitis, and my liver was failing. Apparently a reaction to Asacol (the drug that I had been taking the last few months). I was admitted for a week. Where I met a doctor who saved my life. He ran allergy test, did blood work, and told me to stop eating gluten! He said that I was having an instant inflammation trigger when I ate gluten. He could see it in my blood work, etc. He also suggested that I meet with a naturopathic physician to run test to see where else I was deficient. Meanwhile my GI wanted to prep me for surgery to remove my colon… I had to make some choices.
Once I was stable I walked away from the Gastroenterologist , and into a Naturopathic physicians office. He showed me the areas in which I was malnourished . I had a great IV treatment and my husband and I made plans to move back to Maui. I was still whining off of prednisone (at one point I was taking 75mg a day…) and other drugs to suspend the symptoms of Ulcerative Colitis, but I was determined to slowly taper them all and begin to take control of this disease. This was my last ditch effort to regain myself, my life.
That was 2010. For the past 4 years I have been medicine free, I have completely changed my diet, which is giving me my life back. Only recently have begun to heal, to really think about the process in which I have had to climb, to begin to take control of this disease. Sure I still have ‘off’ days, but I am able to have a quality of life that 5 years ago I didn’t think would even be possible. The one issue I still have is that I still carry around that excuse. The excuse of this disease. I am tired of putting my life on hold for a disease. I want to inspire those who have to battle through living with Ulcerative Colitis, to hopefully inspire hope, and a dream that you can conquer this.
I want to redefine my story, so that this is only a chapter. Recently I switched jobs, moving from an administrative position that took too many hours away from my children and husband, to a more online teaching position. I still get to work with students like I love, but I also have time for myself. Time for the body that I lost 11 years ago. I now have time to take myself back, to fully push this disease away, to take control. I have been a lot healthier in the past few years then I have my entire life. I eat healthy, but it takes a lot for me to maintain weight loss. Maybe this has something to do with years of torture through battling UC, maybe it has to do with the fact I was bulimic in high school….maybe just maybe it is just an excuse. As I heal emotionally, physically, I am redefining my story. This is no longer a story of how someone lost their selves to a disease, this is a story of a survivor. A woman who pushed beyond what the doctors said was possible and regained her life. I am in changing my life and taking back control. I am going to live each day consciously, making the right decisions to further improve my health so that I can have the quality of life I deserve. So that my kids and husband can have the mother and wife that they deserve.
My goal: I want to take my body from deathly and diseased to healthy and strong, pushing my limits. I want to look as healthy as I feel, taking away any and all excuses. And I am going to document this journey to inspire those of you dealing with this horrible disease. Please follow my blog if you are interested in my story and how I redefining myself.
242 Pounds, 5ft 9in, November 1st, 2015.
This isn’t going to be easy, but I want to hold myself accountable, and I want to fight for myself and all of us, proving that we can do this.